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March 24, 2013

“Anxiety is the dizziness of freedom.”
― Søren Kierkegaard

It was the meltdowns that gave him away. The daily hour-long tantrums. My own fear of these episodes eventually kept us locked inside the house for days at a time before I knew. Before someone first dared to utter the “A” word to me. He was shy. He was impulsive. He had a heck of a temper. He loved cars. He would become easily overwhelmed and shut down in large groups. People – friends and relatives- told me I was spoiling him. It was my fault. “Let him cry it out,” they would tell me. “You’re too soft on him.” He was my first child and obviously I had o idea what I was doing. I poured over parenting books, I studied Supernanny episodes, hoping I could glean some sort of insight, some sort of instructions on what to do.

Every time we would go to the mall, he would lose control. I can’t tell you how many times I carried him, kicking, screaming and scratching me out of the mall while I pushed his sister in the stroller. People would stare. Some would make comments. A spoiled little boy, and a mother incapable of controlling her child. Each time I would haul him back to the car, quietly strap him down into his car seat while he screamed, collapse into the driver’s seat, and drive home on a road blurred by the pool of tears welling up, threatening to burst over the damn. It was constant, unrelenting, and draining – for both of us.

After a while, I learned to recognize the signs of impending doom, and would try to pull the ripcord and escape the situation before disaster would strike. There were many days when we wouldn’t leave the house, because I could tell we were already having an “off” day. As Cesar Millan would say on his show, “The Dog Whisperer,” I could learn to recognize a level one or level two situation before it got to a level ten, and correct it. Often that meant baling on restaurants or birthday parties more than a little early, but we just didn’t know what else to do. The obvious problem with that plan was that Troy would build up steam, cooped up in the house with nowhere to go. The meltdowns became more intense and more frequent. Like an asthma attack, each meltdown would leave him exhausted and even more sensitive to the next trigger. One meltdown would lead into the next… I knew something was going on, but I just didn’t know what. All the voices around me told me I wasn’t disciplining him, but nothing worked, and it was breaking my heart to watch him struggle. He came home from preschool each day looking absolutely defeated. We were lost.

Eventually we received a diagnosis, and a team of therapists moved in to try to teach me how to understand my own child. It was a humbling experience, but finally I had a word, a name, an answer of sorts. He was not spoiled. He was autistic. But I was still clueless and felt I had a lot of ground to make up. The therapy gave us insight, and some level of understanding of why he was falling apart in certain situations, and eventually the tools we needed to accommodate him. The tantrums at the mall had been less about not getting the toy he wanted and more about the extreme sensory overload brought on by the lighting, the sounds and the crowds. The incidents at preschool had been less about being defiant and more about the schedule change they imposed by moving snack time ten minutes earlier. Things started to fall into place. We adjusted ourselves and our routines, and Troy started to calm. He started to trust us more, and he started to understand more about himself. His self-confidence grew. It helped him to know about his Aspergers. We called it the “special way my brain works,” and it became something of a badge of honor for him. He started to understand more about himself and was able to advocate for himself more, both at home and in school. It was an amazing transformation of self-awareness.

It has been nearly four years since our pediatrician suggested that Troy might have a form of autism. Four incredible, life-changing years. And now? Now he is about to be discharged from his therapies. He has gained coping skills, he has learned how to navigate the social world, and we have all learned so much more about his remarkable abilities and about how to adjust our own plans to make his world just a little easier to thrive in. I look at him now, self-confident, self-aware, and dare I say, popular with his friends, and it is difficult to remember just how hard his preschool year had been.

Some would say that Troy has nearly “outgrown” his autism. I would argue very strongly that this is not the case. In fact, it seems more that he has grown into it. He is very aware of himself and his emotions. He is great at deploying his coping mechanisms when he needs to. He is well supplied with many of the tools that he needs to navigate a “typical” world. At the same time, his autism has become an even bigger part of him. Possibly because we were able to share his diagnosis with him almost right away, he has had the self-esteem to embrace that part of himself in an incredibly beautiful way. He has unapologetically grown even more passionate about cars. He watches only car shows on television, he plays only car racing games on his Xbox. He enjoys working on the family car with Daddy, and will discuss just about anything regarding cars with us. He knows he is perseverating, but he knows that in this case, it makes him happy and is a potentially useful bank of knowledge he is acquiring. I think this is great. He is focused on something he genuinely enjoys.

At the same time, Troy is also more social than before, but that is partly because he has had the same groups of friends for the last four years between his school friends and his social skills group. He still has to work at least twice as hard as anyone else in the room, but he has become adept at it. He enjoys his time with his friends. He is finding his way. He is happy.

But something else has evolved, and not for the better. His anxiety. When he was much younger, Troy was terrified of tractors being turned on. In fact it spread to a fear of any ride-on toy being turned on. He would sit happily on a tractor until he got the idea that someone was going to switch it on. Then he would run screaming in the opposite direction, absolutely panic-stricken. Over time, he got over that fear, and now loves driving tractors whenever he can. But new fears have stepped in.

I have mentioned before that Joyce has a tendency to elope. It is incredibly frightening. Without any warning she simply slips away, whether out at the mall, in a parking lot, or even out my front door. She is seemingly stealthy and silent about it. When she does, it is not really intentionally leaving, but more of an absent-minded musing that leads her to wander, in search of rocks, flowers, butterflies, anything pretty.

This is stressful for me.

It is completely terrifying for Troy.

He takes his role as big brother very, very seriously. In his mind, her safety is, at least in part, his responsibility. When we are out in public, I can see his little body tense. The arms stiffen and fists clench at the mere mention of taking an elevator. He is forever worried that we will be separated by the automatically closing doors. He stands in between the doors, hurrying us all in, especially Joyce, all the while, actually partially blocking the doors, and making it harder for all of us to get through. When we are in parking lots now, he grabs hold of his sister’s hand with such intensity that she protests, actually pulling away from him and sometimes darting into traffic. Three or four times now, Troy has nearly been hit by cars in parking lots in an effort to rescue his sister. As his amazing ability to perseverate evolves, his anxieties increase. He has mapped out in his mind many of the possible scenarios for his sister to get separated from us, or worse. He takes it seriously. He is protective of her, but at what cost to himself?

I can take the hour long conversations about cars. I could watch my girls flap their hands until they fly away. I can program the iPad to give Mary a voice. I can follow the scripts round and round with Joyce. But this. This anxiety. I just don’t know how to fix this. It is spilling over into other parts of his life, affecting everything. And I worry for him because often the anxiety spins into anger and frustration. He can’t enjoy a simple outing at the mall, not because of the sensory issues or changes in routine that plagued him when he was younger, but because of this ever increasing anxiety over his sister. And now he is obsessing about our impending move to a new house. Same friends, same school, just a new house. But the unknowns are causing him to unwind. We are circling back to the daily meltdowns. He is nervous. He is anxious. He needs to know every detail of every plan for every day. I can understand it. I have written schedules all over the house for him. I have scheduled more behavioral therapy for Joyce to counteract the eloping behaviors. But I feel like suddenly, we are being sucked backwards into the terrifying abyss. The constant walking on eggshells, afraid that something, anything will set off his fear…. It is not the autism. Heck, I love the autism at this point. But this anxiety thing? I know it is just another step on our journey. At the same time, I hate to see him go through it. I hate to see my boy hurting and have no way to fix it. This just sucks. This is where I need some help. And I have yet to find a Supernanny episode on this one….


2 Comments leave one →
  1. Life&Ink permalink
    March 25, 2013 8:17 pm

    Oh Erin, I know anxiety well. It has been Ted’s companion pretty much his entire life and although vastly improved, anxiety can still rear its ugly head. I would say it is the single most lingering issue with him. As you concluded your piece and mentioned your struggle, I thought about Social Stories. Have you written some for him? You could do one about moving. And one about Joyce running away and what you are doing to try to end the behavior and what he can do while she still does it. You could write a story introducing him to anxiety, what it is and how he can recognize it when it starts to take over and then different actions he can take to cope with the anxiety. You probably already have done this but it I thought I would mention it. Just as it is so helpful for us to understand what is happening it is just as important, maybe even in a way more important for kids. They have so little power over what happens in their lives, but helping him understand, giving him things he can do, you are giving him knowledge and knowledge is both respectful and empowering.

  2. March 26, 2013 2:26 am

    You know, I haven’t tried social stories for this… I’ll try just about anything right now. It seems like visual schedules are really helping right now, so it would make sense to try some social stories. His therapist has been reminding him (and now so have we) that Joyce is not his responsibility – that Mom and Dad will take care of keeping everyone together, so he only needs to concentrate on himself. But this direct line of logic only holds for a few minutes with him.

    This elevator thing has been an ongoing fear for him since the first time I (stupidly) gave him a plan for what to do if we ever got separated in an elevator. I thought having a plan would reassure him, and instead it seemed to confirm to him that it was possible to be separated by those automatic doors. Sometimes he reminds me of Temple Grandin in the movie, where she’s dodging the automatic doors in the store. I can see him getting to that point…

    I will try the social stories. Thanks Charlotte.

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